POS1401-HPR LIVED EDUCATIONAL EXPERIENCE OF YOUNG ADULTS WITH CHILDHOOD- AND ADULT-ONSET SYSTEMIC LUPUS ERYTHEMATOSUS: A MULTI-CENTER CANADIAN QUALITATIVE STUDY
Authors: M. Golding, F. Nishat, K. Merrill, R. Kaur, J. Stinson, J. Protudjer, R. Woodgate, C. Peschken, D. Lacaille, U. Oguzoglo, Z. Touma, L. Lim
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Education and employment established in young adulthood predict future lifetime socioeconomic achievements. Young adults with Systemic Lupus Erythematosus (SLE) have physical, cognitive and mental health issues and other comorbidities that may impact employment. <h3>Objectives</h3> To understand the lived experiences of young adults with SLE (YASLE), as students, and to assess their perceived barriers from SLE. <h3>Methods</h3> YASLE were recruited from two Lupus clinics in Toronto and Winnipeg. Semi-structured qualitative interviews were conducted individually via secure video conferencing. As this study was conducted during the coronavirus pandemic, participants were also asked about the pandemic impacts on their education experiences. All interviews were transcribed verbatim, double-coded and analysed using a reflexive thematic approach. <h3>Results</h3> Twelve participants (2 males), 9 of childhood- and 3 adult-onset SLE (cSLE, aSLE) were interviewed. Nine participants (82%) were &lt;25 years old. Five also worked while studying. Five were Asians, 5 were White, 2 of other ethnicities. Half have severe disease (central nervous system or renal involvement). Median duration of disease was 4.0 (25<sup>th</sup>-75<sup>th</sup> percentile, 1.8- 5.3) years. The impacts of SLE on their education experience emerged in 5 themes: 1) <i>Challenges imposed by SLE:</i> Difficulties adjusting to the diagnosis, physical and cognitive symptoms of SLE. While most participants disclosed their diagnosis to their schools, some expressed hesitation. 2) <i>Changes in aspirations:</i> Education/career goals were modified by reducing course load or shifting to more sedentary or less cognitively demanding careers. 3) <i>Coping and acceptance</i>: More adaptive than maladaptive coping strategies were used to manage their SLE, including self-acceptance, pacing, planning and avoidance. All strived to do well in their studies despite SLE and were hopeful for their futures. 4) <i>Facilitating factors for education success:</i> Family and friends' social support, individualized accommodations from school and parental financial support were identified. 5) <i>Pandemic impacts</i>: Virtual learning and flexible schedules enabled participants to adapt their schedules according to their physical conditions (e.g. pain, fatigue). However, fewer opportunities to interact in-person were viewed as challenges. Participants want hybrid options to continue even after the pandemic. <h3>Conclusion</h3> SLE affected students' performance through physical symptoms, fatigue and cognitive dysfunction. Ongoing social and school supports help to support them. Maintaining the remote learning options may increase accessibility for them. These results identified opportunities for developing future supportive interventions for YASLE patients in their schooling which then better prepare them for future employment. <h3>References</h3> [1]Jetha A, Badley E, Beaton D, Fortin PR, Shiff NJ, Gignac MA. Unpacking early work experiences of young adults with rheumatic disease: an examination of absenteeism, job disruptions, and productivity loss. Arthritis care &amp; research. 2015;67:1246-54. [2]E. F Lawson, A. O. Hersh, L. Trupin, E. von Scheven, M. J. Okumura, J. Yazdany, et al. Educational and vocational outcomes of adults with childhood and adult onset systemic lupus erythematosus: nine years of follow-up. Arthritis Care Res 2014; 66: 717-24. <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> Mike Golding: None declared, Fareha Nishat: None declared, Kaitlyn Merrill: None declared, Ramandeep Kaur: None declared, Jennifer Stinson: None declared, Jennifer Protudjer Speakers bureau: Nutricia (Food allergy university, Nov 2022), Consultant of: Novartis 2021, allergy products, Roberta Woodgate: None declared, Christine Peschken: None declared, Diane Lacaille: None declared, Umut Oguzoglo: None declared, Zahi Touma: None declared, Lily Lim Speakers bureau: Pfizer Feb 2023. Not drug related and not related to this abstract.